My spirit floats off the couch, gracefully. But she has to turn around, gesture at me to get up, which isn\u2019t graceful, something I\u2019m glad about. \u201cCan\u2019t you show me how to levitate?\u201d<\/p>\n
\u201cNo,\u201d she scolds. \u201cNot until you\u2019re dead, and then only if you\u2019re nice to me.\u201d My body rolls, grunts. There\u2019s nothing graceful about it.<\/p>\n
Or, I ask her, \u201cRemember the story about my husband\u2019s graduate seminar? How the professor\u2019s back pain forced him to teach lying down on the seminar table, the students sitting around him. Do you think they\u2019d let me move my couch into the classroom? And bring some pillows for my neck and to put under my knees?\u201d<\/p>\n
\u201cYour legs still work, and your back pain isn\u2019t that bad. Get up.\u201d<\/p>\n
I do, \u201cBut will I get dizzy driving to school? Will my legs go numb walking across campus? Will the floor move in the classroom, again?\u201d<\/p>\n
To distract her and myself, I think about that woman I met in the CFS\/ME doctor\u2019s office when I was finally diagnosed. Curly, blonde hair, attractive, she didn\u2019t look sick, but I could see the pain etched around her eyes and hear it in her soft voice as she mentioned the skull-crushing headache. I knew that pulling in of her body to steady herself against all the movement and noise around us. It was the first time I understood I wasn\u2019t alone and invisible, that if you looked closely enough, the act didn\u2019t really work.<\/p>\n
The problem, I try to explain to my spirit, is bearing your own weight. She doesn\u2019t get that. \u201cMy bones, muscles, they all feel like lead, and when did the air around me become a raging river current I have to drag my body through?\u201d<\/p>\n
“Your last day of cycling,\u201d my spirit answers. I returned home after just a half-hour on a level road. I couldn\u2019t imagine my light frame moving easily through air ever again.<\/p>\n
\u201cSome of those antidepressants fooled me into feeling light, again. There was that one making my pupils huge.\u201d When the doctor asked how I was doing at the follow-up, I told him, \u201cGreat!\u201d He laughed, seeing my pupils and took me off the med immediately. Another med for Fibromyalgia gave me soaring nightmares. They could have rivaled the Romantics\u2019 night of drugs and stories like Frankenstein, but I wanted my sleep back, wanted to wake normally, without gasping.<\/p>\n
One Fibromyalgia med works, and yes, my pupils are normal. It\u2019s not prescribed to help with the dizziness with driving, but it\u2019s made that go away. My students, the cats needing feeding, my husband getting me off the couch, although he can sometimes look as impatient as my spirit. The memory of being the oldest and taking care of things when his mother had cancer isn\u2019t a good one. I catch him checking my breathing.<\/p>\n
And a horse bears my weight, the instructor telling me last week we looked good\u2014all three of us\u2014graceful.<\/p>\n","protected":false},"excerpt":{"rendered":"
Humans of ME\/CFS My spirit floats off the couch, gracefully. But she has to turn around, gesture at me to get up, which isn\u2019t graceful, something I\u2019m glad about. \u201cCan\u2019t you show me how to levitate?\u201d \u201cNo,\u201d she scolds. \u201cNot until you\u2019re dead, and then only if you\u2019re nice to me.\u201d My body rolls, grunts. […]<\/p>\n","protected":false},"author":1,"featured_media":339,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[1],"tags":[],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2020\/07\/suzette.png","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/340"}],"collection":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=340"}],"version-history":[{"count":0,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/340\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/339"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=340"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=340"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=340"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}